HDSI

Huntington Disease Society of India is the national organisation dedicated to support Indian HD community in all possible ways.

[HDSI @HDSI_India]

Huntington's Disease is a rare, genetic, incurable neurological disease . It causes debilitating dancing jerky movements, psychiatric & cognitive problems. Disease effects the families in many more ways than one can imagine. Let us stand with them!

[HDSI @HDSI_India]

The brain collection will be done by a team from National Institute of Mental health and Neurosciences. We just need police clearance. the family is uneducated but are willing to donate. please clear the administrative hurdle at the earliest.

[HDSI @HDSI_India]

@PoliceKurnool Dear sir, trying to reach regarding a brain donation of a very rare disease patient from yemmiganur. the family has agreed but the local polic is not allowing.
There are less than 30 brains in the world with this condition. Its very urgent.

[HDSA @HDSA]

This Week In #HuntingtonsDisease Research!
Read the latest post at https://t.co/CrzklhPkhm
THIS WEEK
-#Uniqure announces positive safety data in study of AMT-130
-HD Buzz on Machine Learning in HD Research
-Survey study for presymptomatic and at risk individuals
#LetsTalkAboutHD

[HDSI @HDSI_India]

@KumarKu99688849 @Lolita_TNIE @DHFWKA @PMOIndia @MoHFW_INDIA @CMofKarnataka https://t.co/jF5I8AJYds at 42 minutes you can hear patients' voices. patients/caregivers took lot of pain in attending it in the hope of meeting @mla_sudhakar , hope this message reaches him crossing the barriers of his PAs. sufferers need some solace🙏🙏🙏

[HDSI @HDSI_India]

@KumarKu99688849 @Lolita_TNIE @DHFWKA @PMOIndia @MoHFW_INDIA @CMofKarnataka Dear Kumar, thanks for asking. handout is being released at the program. fb live of the event was telecasted where issue was discussed in detail. spreading awareness + expre solidarity+meeting of patients with lawmakers was the agenda.

[HDSI @HDSI_India]

@DHFWKA @PMOIndia @MoHFW_INDIA @CMofKarnataka Heartfelt thanks of the HD families to the commissioner Shri Randeep, a compassionate, humble, able administrator for his understanding of the sufferings and his promising speech to support the cause. Many thanks to his entire team who made this successful.

[Karnataka Health Department @DHFWKA]

'Light it up for HD'
As part of Huntington's Disease function organised in Arogya Soudha, many HD affected patients attended with their families and Arogya Soudha was lit up with purple and red lights, 'HOPE' for them should always be Bright.
@PMOIndia @MoHFW_INDIA @CMofKarnataka

[HDSI @HDSI_India]

When a 20 yr old Pawan said that he takes care of his mother like his daughter and life came as a circle for her, every heart was touched. More power to this brave-hearts!

[HDSI @HDSI_India]

Today's event at Arogya Soudha Bengaluru saw many patients voicing their sufferings, commitment and courage. This is an extremely important change in the direction of empowerment.

[HDSI @HDSI_India]

Today's event at Arogya Soudha, Bengaluru. Heartfelt thanks to Honourable health minister @mla_sudhakar and Commissioner for health @Comm_dhfwka.

[HDSI @HDSI_India]

Time to hear Indian voices!!

[Huntington's Disease Association @HDA_tweeting]

If you missed the launch of Family Voices, you can watch the first episode on our YouTube. We were lucky enough to be joined by Melanie Pearson who speaks about the impact of #HuntingtonsDisease on her family and about why it inspired her to write a book.

https://t.co/GlXeSXIW6r

[uniQure @uniQure_NV]

Congrats to Kinser Cancelmo on winning the Woody Guthrie Award! She shared the story of her fight to ensure her daughter with juvenile #huntingtonsdisease received the best medical care possible at our recent @HDSA Storytelling Event. https://t.co/b0NzwPYNfw @stellarstoryco

[myHDstory® @myHDstory]

myHDstory is enrolling 200-600 participants!

Register now: https://t.co/BdIOYrTxvk
Learn more: https://t.co/2qsq84Rjf6

The first 200 participants to complete the Pilot Study will be paid a $25 Amazon gift card!

MAKE YOUR VOICE HEARD.
Share your experience with #HD

[HDYO @HDYOFeed]

#huntingtonsdisease community members, @Srotberg15 and @BJsView are looking for individuals who are at-risk and pre-symptomatic for HD to take ~10 minutes to provide feedback on clinical trial participation. Help them out today! https://t.co/58EFK27CNj
 #research #FDA @HDBuzzFeed

[HDSI @HDSI_India]

Partnering with Sukoon Nilaya for palliative and pyscho social care services to HD patients and caregivers.
One can start using their existing services through the Saath saath help line.

[HDYO @HDYOFeed]

BREAKING NEWS! HDYO Congress will be IN PERSON on March 17-19, 2023 in #Glasgow, Scotland!!

#hope #inspiration #raredisease #hdyo #hdyocongress #research #together #events @EHDN_News @LaurenByrne7337 @hdfcures @HDBuzzFeed @EuroHuntington @HDA_tweeting @shayouth @TIC_conferences

[HDSI @HDSI_India]

What else can be more inspiring?

[HDSI @HDSI_India]

@RameshamVuppala Thank you for noticing and appreciating it. Please keep supporting the affected patients.

[HDSI @HDSI_India]

Thank you sir, TSRTC becomes the first organisation to support the cause of HD in Telangana and first ever RTC to join the HD awareness campaign. This will go down in history as a significant effort by a non-public health organisation towards a health cause.

[V.C. Sajjanar, IPS @SajjanarVC_IPS]

Bus Bhavan Headquarters of #TSRTC, lighted up in blue & purple to express solidarity with Huntington's disease patients as part of a global campaign on #Tuesday. This is a symbolic light up to create awareness about this degenerative genetic disease #LightItUp4HD #tuesdayvibe